And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

The Wired Blogger

10:07 PM

What happened to my head?
    a) The aliens returned and placed a probe inside
    b) The barber cur it a little too close on top
    c) I am a star in a local reenactment of a great battle in which the cripple always gets shot first
     d) I am having a 72 hour AEEG to try and catch my brain hiccups to figure out if they are seizures

When asked by an annoying woman in the elevator who just stared at me and asked "Oh My God What Happened to You?" I was tempted to go with A. Instead until noon on Thursday I am wired for sound. I wonder if I can tweak these things to get a decent radio station since we live in the last thing to pass as a city before God Forsaken nowheresville. We hit the event button twice, so hopefully we caught something already. Although it would be my luck to wear this darn thing for 3 long days and have a big episode as we are taking the electrodes off. I loved the instuctions that came with the hook up - don't shower while having 28 electrodes attached to you and a battery box recording them. Um, duh! If it itches (if? if? it started itching before she was done putting the leads on!) don't scratch. Right, cause in my sleep I can control that. That is why for sleeping purposes I get to add a snug knit winter hat over top of the ensemble. Do not stick anything sharp under the bandage to scratch your head. No chewing gum because it makes a nifty pattern on the EEG.
The one direction that has me a little perplexed is the fact that I am not supposed to use my cell phone except on speaker phone or text. Apparently the phones can interphere with the wires and electricity. Now I thought cell phones and their electromagnatism were deemed safe, yet I am being told not to put them near my head because they will scramble my brain's electric signals. I may rethink how often I use my cell phone!
The ditz who hooked me up yesterday had a philosophy that tighter was better for wrapping my head. I have deep red marks under my chin from where she put the chin straps. However, like a winter hat that is a size or two too small the bandage slowly crept upward trying to pop off my head. The suggestion from their office of sticking a nylon over it did not seem like a good idea as I have no bank robberies scheduled this week, so my poor mom had the job of carefully removing what was still on my head and then rewrapping the whole thing. Her chin straps are not gagging me so right there is a huge improvement. All the leads are covered and attached, and I have my trusty hat.
Thursday morning my mom has a DR appointment at the same office building where I need to go get fasting labwork done, so I may venture out in my new look to get labs done and then go out for breakfast. Breakfast is the easiest meal to find a vegetarian option in most restaurants. For fun I could decorate my head with stickers, because at this point dignity is a mute point. Thursday afternoon is dedicated to removing the leads (I have a solution to remove the adhesive that is holding them in place) and then washing my hair 3-4 times to get out all of the sticky conductive goop. Thank God I cut off the 11 inches when I did to donate!! I will be using the cheap shampoo to wash that many times and not my fancy organic expensive shampoo.
Until then I am wired for sound and my head is nice and warm!!
Read On 2 comments

Omnivore Gone Herbivore

11:46 PM

It is incredible the difference in my severe, constant, unrelenting nausea since I became vegetarian and nearly vegan (I love honey butter on bagels and there is chocolate). I used to have to take an anti-nausea pill, an acid control pill, and a pill to empty the contents of my stomach rapidly anytime I ate anything. Now I take them as needed. I can go days without needing anything for nausea except for a pill at bedtime. I am actually getting protein into my system again, and vitamins that I was seriously deficient in because I was existing on so little. However, discovering that the key was to eliminate all animal proteins was not made by any doctor. The doctors kept saying that it might be food allergies, or all neurological, or the result of Gollum (the microadenoma on my pituitary gland), or medication effects, or to just wait 3 months and come back (my favorite - lets do nothing and see if anything changes!). I put the pieces together and it seems that for some reason my body can no longer tolerate or process animal proteins. I have gone vegetarian once before, for a summer, and I have been vegetarian long enough now that once again meat actually smells repulsive. I have no moral issue with you eating it, and I am not out to buy vegan faux leather costs more than the real thing shoes any time soon, but I will stick to my meatless barbque ribs. Thank God that vegetarian comes prepackaged and microwaveable because when I developed the issues with animal proteins I did not simultaneously develop the ability to cook. I look at the raw Tofu and other weirdly named vegetarian proteins like Quean (making things up here) and Waegan and laugh because I have no idea how you take that stuff in the package and make it edible. I then move over to the vegetarian chicken breasts marinading in sweet and sour sauce that you microwave for three minutes before eating and am back in my territory. I do have one question though. If we never established what part of a chicken was the nugget, what exactly is a vegetarian chicken nugget made from?
Read On 1 comments

The Layered Look

7:51 PM

I grew up where you lined your boots up outside the classroom in elementary school and somehow never came home with the same pair. Elementary schools had sleds as playground equipment. I could playoutside for hours in the snow. The worst part of winter and playing outside was always the bundling process, especially when you had a grandparent or parent who thought that anything not covered by at least two layers would fall off. And it would never fail, the moment the last snap was done and the scarf tied you suddenly and inexplicably had to go to the bathroom even if you just went 5 minutes prior.
So I know cold and I know bundling. These skills have come in handy in what I have come to think of as Survivor Woman, Bedroom of Death. We live in an older apartment building that is heated by a boiler system, and my bedroom is as far away from the boiler as you can possibly get. The vents in the living room are closed and it is still warm while my bedroom could serve as cold storage. I half expect one morning to wake up to a few Penguins from the local zoo just hanging out. So each night the challenge is to dress in enough layers to make it through the night without waking up violently shivering and aching from the cold. Layer one usually consists of something like thermal pants, a long sleeve t shirt, and socks. Layer two is then fleece pajama bottoms and a sweatshirt. Gloves are kept next to the bedside and a hat has been known to make its way into the ensemble. By the time I am done I look like the kid brother from A Christmas Story "I Can't Put My Arms Down". I am also not ashamed of busting out the footie pajamas and even wearing a layer under those.
Hopefully my bundling days will soon come to an end as I finally broke down and ordered an electric blanket. I used to have an electric mattress pad which was wonderful but it was broken in one of my moves, and they are more expensive than the blankets. I just hate spending money on something I will only use for a few months out of the year. Then again, hypothermia sucks.
Read On 1 comments

Change the world

2:33 AM
I am hard wired with an innately oversensitive awareness of justice and a compulsion to correct the injustices. I have been this way since I was a toddler worried about the homeless having to sleep outside on the cold winter nights and the children who had no one to love them. My special passion is for children in need, children cast aside by society, children without a chance, children in desperate poverty, children abused and sold as objects. The problem is that the problems are so big and I am so small. It is very easy to get overwhelmed and think that it is impossible to do anything. I want to change the world, to purchase a house in one of the many poverty and AIDS ravaged countries and take in as my own the children no one wants, to change laws and policies, to build schools and shelters and safe places to be a child. Yet for some reason God has decided that, at least for now, I am not going to be in a position where I have the financial resources or health to do all the life saving, life changing things I would do if only I had access to money. Instead I am at a place where I can change the world in smaller, more personal ways. I can change the world for three little girls. I can occasionally support orphans with special needs at Sarah's Covenant House. I can give a little to Reeces Rainbow so that a child can be rescued from a life in an institution. I can do little things with great passion.I can change who I am to be a more open, responsible, dedicated, unafraid to advocate person and that too can change the world. Simple love can change the world.

Read On 0 comments

I Have a Dream

5:35 AM
I could never write a speech as eloquent, as rich in truth, as powerful as those written by Dr Martin Luther King Jr. He led the way to changing our society and he did it without violence or hatred.
In honor of the day set aside to honor him I wanted to write my dreams for our country and our world, the call to action I would set forth for society were I in such a position to be heard.

I dream of the day when no child dies of the effects of poverty. A day when every child will have enough to eat, clean water to drink, and homes that shelter during the storms.

I dream of a country where health care is a right and not a privilege. Where we recognize that as part of our constitutional rights of life, liberty, and the pursuit of happiness we have a right to access medical treatments that will extend our lives, give us liberty, and allow us the opportunity to pursue happiness.

I dream of the day when discrimination based upon disability is vanquished. The day when society will not observe an individual with a disability and automatically come to conclusions about their quality of life, their abilities, and their value. A day when we will be seen for the people that we are and not the disabilities that we happen to have.

I dream of a day when all children from all socioeconomic levels will have equal access to quality education. When children of every race, every nationality, every religion, every ability will sit together in our classrooms and be engaged and challenged by teachers who are supported and properly trained.

I dream of a day when children can just be children. When they will be safe from becoming child soldiers, when they will be protected from the gangs that attempt to recruit them, when they will have the mentors and parental guidance they desperately need. A day when all children can play together without fear.

I dream of a day when all religions learn to respect one another, to honor each other instead of committing horrible atrocities in the name of their God. The day when the unifying message of God is Love is given life and breath.

I dream of a better tomorrow, of a world where everyone has enough, of the end of racism and sexism and ableism, of the innocence of childhood, of peace, of coming together instead of tearing apart. I have a dream.
Read On 1 comments

Odd Skills for a Resume

11:49 PM

I was thinking, because I have been having chronic insomnia and there is nothing better that I could be doing, that I have some incredible skills that would be the glory of any resume.

I know exactly how many matchbox cars will flush down an industrial grade toilet.
I know how to pick a lock to rescue the child who accidentally locked themselves in the bathroom/bedroom/closet.
I have the book brown bear, brown bear memorized. And each peach pear plum. And if you give a mouse a cookie.
I can do the hookey pookey and believe that really is what life is all about.
I can fit a weeks worth of groceries into two reuseable bags on the back of my wheelchair.
I can make special education equipment out of pool noodles, velcro, and duct tape.
I can have entire conversations in my sleep.
I can skip long security lines in a single bound.
I can sign most major curse words.
I can change a diaper, with kid standing, in about 30 seconds.
I can piss off authority/superiors before I even meet them.
I know all the verses to the wheels in the bus, and that bus driver needs a raise!
I can look at fourteen children and blatantly lie by saying it is raining because it is too freakin hot to breathe outside.
I speak toddler.
I am fluent in Pig Latin.
In German I can ask for beer and a cheap prostitute.
I can hold a bucket for a vomiting child with one hand while spoon feeding a child with the other. Never mix up the two hands.
I am not ashamed of doing my best runway walk down a school hallway after letting three year olds put "make up" (face paint) on me and then dress me in butterfly wings, a princess tiara, red velvet elbow gloves, and high heels.
I can fall up stairs.
I can puree anything. Pizza - done it. Chicken strips - done it. Salad- done it. Some foods actually look better pureed than whole like school vegetarian lasagna.
I can hold negotiations with a toddler that would befuddle most SWAT team negotiators and embassadors.
I can rate the accessibility of most public restrooms within 2-3 miles of where I live. And most of the stores.
I can burp the entire alphabet.
I can pass for 18. I am 30.
I can totally bullcrap my way through essay questions on exams and usually hit on enough correct points, even by accident (a blind squirrel finds a nut once in a while) to do fairly well on the exam.
I can take 14 children age 5 to the large science museum in Pittsburgh with only the help of a brooding teenager and return with the same 14 children intact.
 I can tune out the sound of a child having a tantrum even as they throw themselves over my feet in mass hysteria.
I always have something odd yet useful in my purse.
I speak medical. Sometimes I even dumb it down for the doctors.
I can recognize poison ivy and am smart enough to wear long pants and long sleeves when near it. Can't say the same for the other two prissy girls working with me on that missions trip.
I can fill up an entire blog post with this list of random meaningless abilities.
Read On 2 comments

And Stella Makes Three

11:52 AM
Yes, I am crazy. I adopted one more little girl to sponsor as I had a feeling that something was left undone, that someone was waiting. That someone was Stella, an 8 year old orphan in Uganda who lives with her grandfather. Her chores are many and include washing clothes, cleaning the home, buying and selling in the market, and carrying water. Like most little girls she enjoys playing with dolls, playing hide-and-go-seek, jump rope, art, and storytelling. She is in the equivalent of Kindergarden and is doing above average in her schooling. I do not have her full sponsorship packet yet, but I wanted to share my newest (and last - at least for the foreseeable future) little girl. Please pray for her as she has already had a very difficult life.

Read On 0 comments

Holding on to Hope

10:11 PM

My "words" that I want to live out with passion this year are faith and hope. Faith includes believing that the Lord will provide in all circumstances exactly what is needed without fail. Hope is the joy that comes from faith, the belief in something more, the intangible that you hold on to when all seems lost. Faith and Hope are meant to be shared, and so I would like to introduce to you two very special little girls that are now my very special little girls.

Meet sweet Miangeda! She is six years old and lives in the mountains of Haiti. She was chosen to be ours by my mother and I as she just captured our hearts. She looks so solemn for such a little thing. I have not yet received the full sponsorship packet for her, but I do know that she loves reading and playing with dolls, and is doing above average in school. Please add this little one to your prayers!

I would like to introduce precious Monique! She is nine, going to be ten in August (her birthday is only 5 days after mine!) and lives on the flatlands of Burkina Faso, one of the poorest countries in Africa. I fell in love with her and can not wait until the day I receive a picture of this sweetheart smiling! I do not have her full sponsorship packet either but I do know that she has few if any toys and instead enjoys playing with boxes. Boxes, it just breaks my heart. She too is doing above average in school despite all obstacles. Please add her to your prayers!!

This is the Bethelehem Child Survival Program in Bory. Haiti. Haiti's maternal mortality rate is 630 per 100,000 while the infant mortality rate is 86 per 1,000. The Child Survival Program provides monthly health screenings for pregnant mothers, a monthly food kit of healthy nourishing food, immunizations and health screenings for infants and young children, education, parental skills training, and job skills training. Please pray for the mothers and children who receive care here.

Yes, I live on a very limited budget. Yes, I could use the money elsewhere. But elsewhere is not where I am called to use it and elsewhere is not going to make a difference in the lives of two beautiful, precious little princesses who already look so weary. Elsewhere is not going to provide immunizations to babies, elsewhere is not going to feed pregnant mothers, elsewhere is not going to educate a community of young mothers on how to meet the needs of their child - simple things like hygeine and avoiding infections to how to read a book together. Elsewhere and Some other time are always going to be there. These children are here, now and they can't wait. I believe that living with passion means giving until it causes sacrifice. I can not change the world, but for now I can change a few lives. God will provide the rest. And I get to share with these little ones the fact that they are in fact true princesses of the Lord, real princesses and instead of being forgotten they were chosen and so loved!! It all comes down to faith and hope!
Read On 3 comments

Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."

Blog Info

To read a post, just click on the title for that day's post and you will be taken to the entire journal entry. If you click on the photograph, you will see that picture enlarged.

Wild Olive

Wild Olive

BlogHer Logo

Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst

Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies

* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.